This blog site is a place for Anna Jaworski, author of Hypoplastic Left Heart Syndrome: A Handbook for Parents and My Brother Needs an Operation, and editor of The Heart of a Mother and The Heart of a Father, to keep readers updated on important news related to Baby Hearts Press and important information for the heart community. For more information about Baby Hearts Press, please visit us at http://www.babyheartspress.com.

Thursday, May 24, 2007

Welcome to the Baby Hearts Press Blog! This is a way for me to keep in touch with my readers and friends and for me to give people an idea of what it’s like to be the mother of a pre-teen born with hypoplastic left heart syndrome (HLHS) who is post-Fontan. I commonly receive requests from readers and friends to let them know how Alex is doing. Now I have a forum to use for that very purpose.

5/21/07 I am hoping that the next post will be written with a lighter heart. Tonight I am writing with a bit of a heavy heart, although I know that things certainly could be worse. Tomorrow Alex has another appointment with Hematology.

Since Alex’s last cardiology appointment about 7 months ago, we knew that his cardiologist was concerned about his dropping oxygen saturation level (SATs) and that he was considering doing a catheterization on him. It’s been three years since the last one and I guess it’s time, but it isn’t something that Alex or I look forward to. At the last cardiology appointment, to everyone’s surprise, Alex’s SATs were actually higher than the previous visit!

Thus began Alex’s visit to the lab at Scott & White to have blood drawn. Because the first set of results showed an unusually low platelet count, Alex had to give another sample the very next week. That sample showed that Alex had been getting over an infection, but the count was still lower than it should be. That prompted a referral to Hematology and yet another blood draw. The visit to Hematology resulted in more than a blood draw to look at his platelets. They also did a Complete Metabolic Profile (CMP) on his blood. The good thing about this is that things look great -- except for his platelet count. It’s still too low.

Anybody who knows me can guess the next thing I did. It was on Google and MedLinePlus for searches on what could possibly be wrong with Alex. Alex has mild thrombocytopenia (low blood platelet count). His father has pseudothrombocytopenia. We were hoping that maybe Alex had the same condition as his father -- where it looks like there’s a problem with the platelets, but upon closer inspection, everything is fine. Unfortunately, Alex’s condition is not like Frank’s.

The next step for Alex was a visit to the ultrasound lab where they did an ultrasound on his abdomen. I’ve seen many ultrasounds on his heart, but never on his spleen, kidneys or gallbladder. The good news is that most of his organs look good. The bad news is that his spleen is enlarged. His platelets are also enlarged. This is not a good thing. It appears that Alex’s spleen is gobbling up his platelets. Not good.

So tomorrow we go back to Hematology and Alex has to give yet another blood sample. I am sorry for him that he’s having to go through this, but it’s what his cardiologist is requiring before he caths him. I don’t blame him, but I sure wish we could stick with noninvasive tests. No such luck at this point.

I’m hoping that the next Blog entry will be one with good news and that I will feel more joyful in writing it. Still, it feels good to get my feelings off my chest and onto the page. Writing has always been therapeutic for me.

If any of you have had a similar experience and would like to tell me about, please do! You can write to me at jaworski@vvm.com.

2 comments:

I get weary just reading about what you have done:) You are such an inspiration to everyone. I am glad to see that you have taken a little time off to focus more on the family. It is hard to balance things but on the other hand you have done so much to raise awareness for CHD and that is a great thing.

I love your blogs and hope that you continue to do them. Nice to know there is somewhere I can keep up with you.

I love the fact that the kids are using their talents to earn money. Can I send Brandon over to live with you guys for a while to go through the swimming lessons and the robotics classes?

Deb, thanks for reading the blog and writing a comment. I'm so happy we could get together with the boys when you visited the United States. I can't wait to get back to Germany. Alex, Joey and I are still studying German and we'll be much better prepared when we visit again.

I wish Brandon could take part in the robotics classes. I know he'd love them! And regarding swimming lessons. . . I'll never forget your generosity in opening your home to my family when we visited Germany and how much fun we had in your pool. I think Brandon could probably GIVE lessons!

I wish we lived closer, too. Keep writing, Deb. I can't wait to see what you will be writing next!